MemoriesLike the corners of my mindMisty watercolor memoriesOf the way we were

The 1973 hit movie, The Way We Were, features a haunting song written by Alan and Marilyn Bergman with the same title. As time passes, we not only mature physically, but in our thoughts as well. Our minds form connections of past and present experiences to prepare for the future. Some people are fortunate to continue this process throughout their lives while others, many as they enter old age, suffer a decline in mental ability and dementia. One of the most common and debilitating forms of dementia is termed "Alzheimer's" disease, first described by German physician Alois Alzheimer in 1906.

Alzheimer's is now recognized as a significant and prevalent health issue. According to the Alzheimer's Association, it currently affects over 5 million Americans. Medical specialists, pharmaceutical companies and long term care facilities have been heavily impacted by its effects. For those afflicted and their friends and families, coping with the disease is a daunting and confusing task.

David Troxel, MPH, co-author of A Dignified Life, The Best Friends approach to Alzheimer's Care, recently spoke at Aegis Living in Fremont - an assisted living care facility - about the challenges and opportunities of living with loved ones suffering from Alzheimer's. Internationally known as an advocate for Alzheimer's and memory care, Mr. Troxel spoke with Tri-City Voice about his experience with Alzheimer's.

TCV: How did you become interested in Alzheimer's? Do you have a personal interest?

Troxel: Over twenty years ago, when I started my work in this area, there was no one in my family with Alzheimer's. My first job out of graduate school was at the University of Kentucky Center on Aging. This was a 'happy accident' for my career since after my first day I knew I had landed in the right spot. I loved working with the clients and families. Since then, a number of family members, including my mom who is living in an assisted living facility in Sacramento, have Alzheimer's.

TCV: From those early days of your career, what has changed in your thinking about Alzheimer's?

Troxel: When I first started in 1986, the conventional wisdom was that there was nothing to do that would impact the person - keep them safe and unstimulated - so all attention was focused on support for family caregivers. Over the years, we have now come to realize that the best way to help the caregivers is to help the patient with challenging behaviors. After early years working in this field, many of us began to realize that environment, activities, teaching caregivers to accept and create a positive environment are important. All of these things add up; they help a person with the disease to have more dignity and be less challenging.

TCV: How is Alzheimer's differentiated from dementia?

Troxel: I am asked this question every day. Dementia is a broad term for anything that can cause confusion, memory loss and personality challenges. For instance, a B12 deficiency, which is treatable, might cause dementia. Alzheimer's is only one, but the leading cause of dementia in the elderly. Small strokes can also cause dementia; other medical problems such as acute depression can mimic dementia. Everyone with Alzheimer's has dementia but everyone with dementia does not have Alzheimer's.

TCV: Is the supportive therapy different for Alzheimer's different from other dementias?

Troxel: I would argue that the broad concepts are the same. People suffering from memory loss and confusion are similar. Family members are coached to have an appropriate level of expectation. If you expect complex tasks such as tax preparation or medication control, expectations are probably set too high. If, however, everything is done for the person including simple tasks such as folding a towel, that person is being robbed of their dignity and those actions can actually contribute to a decline.

It is a bit different in how different dementias respond to medication. People with pure vascular dementia caused by mini-strokes may not respond as well to the medications designed for Alzheimer's such as Aricept(r).

People with frontal lobe dementia can become outrageous with delusions of grandeur - major personality issues - more so than with Alzheimer's. If for example, your uncle exhibited outlandish behavior and was diagnosed with Alzheimer's, we would look at triggers for that behavior and strategies to manage it. However, if the behavior was caused by pure frontal lobe dementia, we might have to accept it knowing the brain is being affected rather than just a consequence of being stubborn and difficult.

TCV: Is Alzheimer's always associated with old age?

Troxel: No. It does happen in younger people too. There is one rare form of Alzheimer's that strikes even in the 30s. This is familial and genetic in origin. Most people are diagnosed in the 70s, 80s and 90s. However, the last statistic I read indicates that there are over 500,000 people in their 50s with Alzheimer's. That is one of the distressing challenges of this disease.

TCV: When, as a family member or friend, should you suspect Alzheimer's?

Troxel: Alzheimer's is very subtle and it is often difficult to know when the right time has arrived to think about this as a cause. If a person's memory, thinking and judgment interferes with their ability to live their life - job, routine chores, etc. - then it may be time to worry about Alzheimer's. Everyone can forget a name now and then or become forgetful due to stress, but can still do many routine chores (i.e. balance a checkbook, pay bills, etc.). But, if someone who has always been a great cook begins to forget how to make their favorite recipes, an engineer who has always been precise begins to make mistakes in an area that allows little room for error or excuses for forgetfulness become far-fetched, it may be time to begin to worry.

TCV: How does a lay person address the problem?

Troxel: This is also a position that has evolved over the last decade or two. First, try the truth - express your concern over what is happening. "Gee mom, I have noticed you are having some memory issues; I am concerned. There are all sorts of things that can cause this so let's see the doctor to see what could be causing this." A sense of optimism is essential. If there is active and emphatic resistance, go to Plan B in which you keep notes - a record of what is happening - concerning unusual behavior such as a storing a toaster in the freezer or meals being burned by an excellent cook, frozen orange juice in the coffee maker, etc. This should then be passed on to the doctor who can schedule a "routine" physical. If nothing works, try again in a couple of months. Maybe on the third or fourth time, mom or dad will become more cooperative when then sense a problem.

TCV: Do Alzheimer's behavior problems come and go?

Troxel: One thing I have learned in this field is, "Always be surprised." Virginia Bell (co-author) and I have noted in our books that if you have met one person with Alzheimer's, you have just met one person with Alzheimer's. They are all so different. People have good days and bad days; good weeks and bad weeks. If someone goes from good to bad and back again over years always reaching a plateau, that is probably not Alzheimer's. Alzheimer's and most dementias are progressive. Some people, however, are able to rally. Families may think the pattern they see is indicative of what is happening, but they may only see their relative for a short period of time. Alzheimer patients are often capable of Academy Award winning performances, so what is visible to family members is behavior stimulated by their visit and the excitement colored by what they hope to see. A neuro-psychological test can be administered by a trained examiner in which scientifically based questions and requested actions reveal Alzheimer's.

TCV: How can friends and family interact with someone with Alzheimer's?

Troxel: I have learned that people with Alzheimer's have many of the same basic emotions and needs as anyone else; they want to be loved and needed. They enjoy humor and a compliment; a chocolate ice cream cone. My advice is to "lighten up" and have a little fun. Bring in something to talk about, reminisce and praise them for past accomplishments. Even a short visit is okay.

TCV: Do those with Alzheimer's still process information?

Troxel: Yes. Those with dementia may be similar to going to France when you speak a little bit of the language but are not fluent. It is hard to understand what is being said and processing the language and a response can be exhausting. Some people too, because of past issues or changes in their brain, can be very challenging anyhow.

TCV: How long do people live with Alzheimer's?

Troxel: The average length from diagnosis to death is eight years, but I have met people who have lived 20 years and others who go downhill in four or five. There are some who have what is termed "MCI" or Mild Cognitive Impairment with fairly benign memory loss that does not progress. Caregivers just need to work with what is there as long as possible because until the very end; there are still things people with Alzheimer's will enjoy such as music, touch, aroma therapy. Even if specific identities are confused or lost, an emotional memory of a special relationship remains. You just have to travel the journey with them - be in the moment.

TCV: Is Alzheimer's research making progress?

Troxel: I believe the progress is in two opposite, but good directions. There will be a whole new generation of medications within the next year or two. More powerful mediations will slow the progression of the disease. This is important because most Alzheimer's patients are well into their 70s, 80s or 90s. To delay the onset by even five years, will make a tremendous difference because in some cases, it would occur beyond the natural lifespan. Prevention strategies are being explored as well.

Alternate therapies including environmental pieces, music, pet therapy and other activities are actively being explored. This is encouraging especially since there is always the chance that promising medications will not be effective. In the meantime, if better models and training can coach family caregivers, support staff of facilities and figure out more behavioral interventions, Alzheimer's patients will regain dignity and reduce combativeness and emotional challenges.

I encourage everyone to support the Alzheimer's Association, a large private donor to research and write a letter to your congressional representative to continue public support. There are good studies currently being funded and proposals for others that will significantly advance our knowledge and tools to control Alzheimer's. If everyone would send a postcard on the Friday following Thanksgiving, it would send a powerful message to the present administration and congress.

TCV: Any final advice?

Troxel: I encourage caregivers to plan ahead and research available resources early. Use the Alzheimer's Association and support groups even if placement in a facility is not anticipated. It helps to gather information and make decisions in advance of a crisis. Visit my website bestfriendsapproach.com and the Alzheimer's Association at www. alz.org.